What does that mean? Wait and see... Wait and see..
So many questions ran through our minds as we tried to make sense of Ryker's lung, Ryker's spine, all while still battling his hydrops, my blood pressure (symptoms of preeclampsia), and worrying about polydraminos and possibly going into labor early. We were unsure how Ryker would do once he was born. We were informed that he would need a NICU stay (due to his anomalies). We continued to hope that his NICU/hospital stay would be short lived... Would it be a few days? A week? Maybe a month? As we got closer to Ryker's due date of Halloween, we still had no definite answers... It would all depend on how Ryker did outside of his cozy womb, breathing our Colorado air. My blood pressure continued to climb and we continued to have severe polyhyramnios and the doctors recommended that we were induced early... They also recommended that we would have a C-section because they did not want to injure Ryker's spine more.
Kyphosis...
We were still being monitored weekly. Then, during one of the ultrasounds, we were told they noticed something new... An angled spine. A kyphosis. Kyphosis comes from the Greek word for "hunchbacked." Ryker was diagnosed with a severe focal kyphosis. Ryker's kyphosis is congenital, meaning it developed in utero during his development. On September 2, 2016 we had another MRI. For this MRI, we were HUGE! I was measuring many, many weeks ahead. This is when they noticed that Ryker moved his arms but there was minimal, if any, movement in his legs. We questioned if Ryker would ever run... walk... stand on his own. We were told, it will all depend on Ryker.
After Ryker's First Surgery...
Polyhydramnios.
We continued to be monitored weekly to see if his BPS or hydrops was progressing worse or getting better. Week after week, we were back to the doctors at Children's Hospital for an ultrasound and week after week, we were on the "wait and see" watch. Doctors were beginning to be concerned because we developed polyhyramnios and I was carrying too much fluid. Carrying to much fluid meant that we could go into labor early, which would put Ryker even more at risk.
Surgery While Pregnant...
In the beginning of July of 2016 we headed to Children's Hospital Colorado to have a laser ablation surgery in order to stop Ryker's BPS from growing and hope that his hydrops would resolve. This surgery has only been performed a handful of times in utero and Ryker has been one of the first.
In the Beginning...
I was referred to the high risk doctor for low blood platelets, which I did not have with Ryker's older siblings. Upon this doctor's visit through an ultrasound with the high risk doctors, they determined that Ryker had a Congenital Cystic Adenoid Malformation..CCAM.
In June of 2016, the doctors sent us for an MRI. Having an MRI in the past has been frightening and frustrating enough for me... but having one when you are pregnant... Words cannot describe how you feel. It was beyond overwhelming. With the results of the MRI, the doctors were able to diagnose Ryker with a bronchopulmonary sequestration (BPS aka mass in his lung). A bronchopulmonary sequestration is a rare lung mass. We were monitored weekly with ultrasounds to see if Ryker's BPS was getting better or worse. Unfortunately, his BPS continued to grow, shifting his heart, and creating very little space for his lung development. The doctor's ordered an MRI as his BPS grew, he showed signs of hydrops (heart failure). The BPS continued to grow and shift his organs to the point intervention needed to be taken in order to save Ryker's Life.
1. In the Beginning
2. Surgery While Pregnant
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3. Polydramnios
4. Kyphosis
5. Wait and See... Wait and See.
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